Exercise(sorry I know this maybe a controversial subject)

[Dadadoo]

Does anyone here exercise regularly? I am aware that “graded exercise therapy” was more debunked as a strategy for me/cfs, but curious if anyone does exercise and how much? I’ve seen people state that it could or has made them permanently worse, is that the general consensus here?

I’ve had to continue to exercise due to different chronic pain conditions that get worse if I don’t move enough or am carrying too much extra weight. So I was hoping to chat more with others who have me/cfs about what they do, the thought about permanently getting worse due to exertion and if anyone is interested; what I’ve experienced, my theory on why graded exercise therapy is not helpful and how exercise impacts my day to day life with me/cfs.

I’m not claiming exercise is any type of even longterm “cure” or exercising is something people with me/cfs should do, but I’m generally very curious on others experiences around exercise since developing me/cfs. I feel like a pretty substantial outlier from what I’ve read of others experiences.

 

[hapl808]

I think very carefully paced exercise when you're very mild is great. My biggest problem was trying to 'work out' the way I used to, which led to constant crashes.

Mostly weight can be managed more effectively with diet than exercise - that's true for almost everyone, sick or healthy. Eating one Chipotle bowl would probably take a marathon to work off. My breakfast today was one slice of pumpernickel bread with butter.

Keep in mind that when I was very mild, I crashed constantly, was sick all the time, exhausted 24/7, didn't recover quickly, etc. The language of ME/CFS is quite silly, because 'mild' illness brought me close to disability.

However, I consider moderate the time when I could only leave the house maybe 1-2 times per week, and couldn't do anything strenuous, let alone exercise.

Now I'm moderate-severe, and I cannot stand up without assistance. Exercise is a nonstarter. When I was moderate I kept trying light band resistance exercises, etc. I was so stubborn it took me years to realize it wasn't helping and was likely making me worse.

But it's all individual. When I was more mild, reading a comment like this would've just made me roll my eyes and assume I was 'better' than the person writing it. Had no idea I would end up there.

 

[Vladimir]

I do surf when I get enough energy to endure a flight to the area with ocean waves - in my situation, it is a 24-hour trip with 2-3 connections.

Paradoxically, by the end of 10-12 day of surfing I can spend up to 3 hours in the ocean - if you ever surfed, you know that an untrained person would be exhausted within 30 minutes of active paddling. And the more days I surf, the better I get. Unfortunately, it all ends as soon as I get back home where I get back to my moderate ME.

I do crash after first 1-3-5 surf sessions, but at the same time I always feel a hint of positive shift in my whole body perception. I have to push through the lack of energy in the first days, and I feel awful for the first hour or so in the ocean, but then some energy comes. I also do rest as much as I need between sessions - 1-3 days, until something clicks in my head and I just go despite of the ME symptoms.

That's another (and main, actually) reason I believe that ME is caused by the dopamine/serotonin imbalance.

 

[andyguitar]

I’ve seen people state that it could or has made them permanently worse, is that the general consensus here?

Yes.

 

[cfs since 1998]

Does anyone here exercise regularly? I am aware that “graded exercise therapy” was more debunked as a strategy for me/cfs, but curious if anyone does exercise and how much? I’ve seen people state that it could or has made them permanently worse, is that the general consensus here?

I’ve had to continue to exercise due to different chronic pain conditions that get worse if I don’t move enough or am carrying too much extra weight. So I was hoping to chat more with others who have me/cfs about what they do, the thought about permanently getting worse due to exertion and if anyone is interested; what I’ve experienced, my theory on why graded exercise therapy is not helpful and how exercise impacts my day to day life with me/cfs.

I’m not claiming exercise is any type of even longterm “cure” or exercising is something people with me/cfs should do, but I’m generally very curious on others experiences around exercise since developing me/cfs. I feel like a pretty substantial outlier from what I’ve read of others experiences.

I used to do 20 minute or so powerwalks. It had a very slight positive impact on my physical fitness but did zero for my ME/CFS short or long term other than the temporary dopamine effect everyone gets when they exercise. I've tried running and jogging for short periods (2-3 minutes) and could never build any stamina. I lost my ability to do any kind of exercise when my orthostatic hypotension got worse.

This is why I think the deconditioning theory is junk, although there are plenty of scientific reasons disproving it as well. Even if there were something that caused us to be deconditioned, something is preventing re-conditioning and it's not just PEM or PEM avoidance.

 

[Wishful]

I think you'll hear a whole spectrum of responses. Some regret trying to exercise, some find it beneficial. The only way to know your response to exercise is to try it.

I've never had a problem with exercise, other than short-term PEM, and that PEM depended on using muscles in unusual ways rather than intensity and duration. I stay what I think is above-average fitness by a daily 40 minute walk, occasional long bike rides or hikes, digging--soil in summer, snow in winter--sawing and splitting firewood by hand, and other such activities. A couple of other people here said that they continued to do bodybuilding exercises without problem.

Given the potential for lengthy crashes, I recommend against starting with a strenuous exercise plan. A gradual build-up might let you know your limits before exceeding them too much.

FWIW, exercise never seemed to improve my ME, and periods when I did less didn't make it worse either. I exercise to avoid other potential health problems. ME is bad enough on its own; I don't want another nightmare on top of that.

 

[Mary]

@Dadadoo - exercise is not my friend, nor for most people with ME/CFS. In 2015 the Institute of Medicine proposed a new name for ME/CFS - SEID, or Systemic Exertion Intolerance Disease. There's a reason they did this. Post-exertional malaise or exertion intolerance, is considered to be the hallmark of ME/CFS. For me the exertion which causes PEM can be physical, mental and/or emotional. Watching an intense video for 3 hours can cause me to crash. Riding an exercise bike for 10 minutes caused a crash.

Incalculable harm has been done to millions worldwide by the insane theories propounded by the BPS (biopsychosocial) brigade, which essentially say we just believe that exercise harms us. Yeah, just like one's belief in AIDS is what causes all of that harm too, right? Or if one had a broken leg, why NOT keep on trying to walk on it? Why pay attention to how you feel? That's what these idiots have told us in essence.

If I come across as a bit angry, it's because I am. We might have had some solutions by now if we'd been taken seriously for the past 50 years. And how the BPS brigade managed to wield so much power with their idiocy is mind-blowing.

I was extremely active pre-ME/CFS - worked full-time, bike rides etc. on the week-ends, it's hard to remember - it's been 26 years. Now I'm limited to around 4 hours of light activity a day, with rest thrown in. Or I'm bedridden the next day.

 

[wabi-sabi]

If you can do something without triggering PEM, then you're good. If you trigger PEM and crash then you are not good.

By all means do what you need to do to maintain a healthy weight and care for your pain. It's tough when you are balancing more than one chronic condition.

 

[Florida Guy]

My theory is that if you do enough movement you will feel better than if you tried to stay motionless the whole day as much as possible. Deconditioning is a fact and our muscles need some exercise. I don't mean running or weight lifting necessarily, though some pwme can do that. Most of us can't do any actual exercise but we can move around. Most of us can walk or get around with crutches. If we are able to do it without pem we should do as much walking and activity as we can without triggering a problem, I think

It is hard to maintain the envelope of activity you can do without pem without going over the limit. Its hard but can be done. Habits and routines can be our friend. If we find we can walk a certain distance and no problems a day or two later, then we should do it regularly unless we feel too worn down. Fitness watches help with pacing.

I know some can't do any of that but maybe they can do movements while sitting or lying down? There are videos on chair yoga, probably on bed yoga too. Lift your legs, arms, turn left and right, something like that. If the muscles get too weak, it makes the cfs/me symptoms worse. Is it you can't do something because of the me/cfs or is it because your muscles are so weak? Its going to be a mix of both I think so if you can keep muscles from deteriorating without causing a lot of crashes, that should be a good thing

 

[hapl808]

Incalculable harm has been done to millions worldwide by the insane theories propounded by the BPS (biopsychosocial) brigade, which essentially say we just believe that exercise harms us. Yeah, just like one's belief in AIDS is what causes all of that harm too, right? Or if one had a broken leg, why NOT keep on trying to walk on it? Why pay attention to how you feel? That's what these idiots have told us in essence.

If I come across as a bit angry, it's because I am. We might have had some solutions by now if we'd been taken seriously for the past 50 years. And how the BPS brigade managed to wield so much power with their idiocy is mind-blowing.

I was extremely active pre-ME/CFS - worked full-time, bike rides etc. on the week-ends, it's hard to remember - it's been 26 years. Now I'm limited to around 4 hours of light activity a day, with rest thrown in. Or I'm bedridden the next day.

Same. And I'm limited to about 30 minutes of light activity (meaning crutching to another room in the house). I used to work out for 1.5 hours 4-5 times per week. Now I can't stand without assistance.

But the BPS crowd still flog the same old crap. They have caused more harm than most cruel dictators, yet they will go to their graves thinking themselves caring and decent human beings. I may not believe in an afterlife, but those people make me wish I were wrong, because I know where they'd be headed.

My theory is that if you do enough movement you will feel better than if you tried to stay motionless the whole day as much as possible. Deconditioning is a fact and our muscles need some exercise. I don't mean running or weight lifting necessarily, though some pwme can do that. Most of us can't do any actual exercise but we can move around. Most of us can walk or get around with crutches. If we are able to do it without pem we should do as much walking and activity as we can without triggering a problem, I think

It is hard to maintain the envelope of activity you can do without pem without going over the limit. Its hard but can be done. Habits and routines can be our friend. If we find we can walk a certain distance and no problems a day or two later, then we should do it regularly unless we feel too worn down. Fitness watches help with pacing.

I know some can't do any of that but maybe they can do movements while sitting or lying down? There are videos on chair yoga, probably on bed yoga too. Lift your legs, arms, turn left and right, something like that. If the muscles get too weak, it makes the cfs/me symptoms worse. Is it you can't do something because of the me/cfs or is it because your muscles are so weak? Its going to be a mix of both I think so if you can keep muscles from deteriorating without causing a lot of crashes, that should be a good thing

It's a nice, logical, intuitive theory. I don't think it means much of anything - no offense meant.

I can barely get around with crutches. It constantly causes me PEM. I don't want to be bedbound and lose my muscles, but there's no habit or happy medium for me. None. Zero.

I spent a few years doing movements while sitting or lying. Massagers, resistance bands, seated chi gong, and so forth.

I can't do it because of ME/CFS, not because my muscles are so weak. It's not a mix. I could easily rip open a jar - but I will then be unable to type on a keyboard for a week or two.

You only know your own situation, and therefore you think you've developed universal coping mechanisms. I'm not sure if this is one disease or 20, but be careful that you don't project. Even doctors with experience treating tens or hundreds of ME/CFS patients do this, and assume what their last 10 patients experienced will go for the 11th patient.

I cannot do anything without crashing anymore, including just working on a video edit for 20 minutes. What muscle am I using to do that?

 

[Mary]

My theory is that if you do enough movement you will feel better than if you tried to stay motionless the whole day as much as possible. Deconditioning is a fact and our muscles need some exercise.

For me, every day is an exercise in doing as much as I can without triggering PEM. Very often I fail. But I never make it a goal to do as little as possible - rather, it's the opposite. I WANT to be able to live my life. It's very hard on days when I do feel well to make myself stop whatever it is I'm doing for fear of being bedridden the next day, which is a certainty if I don't stop in time. How do you ration your energy? I want someone to invent a gauge which I can attach to my body and which will start blinking with a very big red light and emit a very loud noise when I've reached my limit for the day, so that I don't crash the next.

If I have energy, I've never just sat all day trying to conserve it. And I've never heard anyone here say they do as little as possible, unless it's simply how they have to live to keep from getting even worse.

Activities of daily living require so much energy, I generally don't have any "extra" to spend on "exercising". My "exercising" is doing laundry when I can or washing my hair, or doing some errands with a careful eye on parking lots - if I have to walk too far from my car, I'm doomed. etc. etc. etc. Or I might take a phone call - I've often crashed from talking too long too late in the day . . .

So I don't walk around for "exercise" - I do it for things I need to do. And many days I can't do anything because I've overdone it the day before.

It sounds like you think that many of us just lie around to save energy - it's the opposite.

 

[Wishful]

Habits and routines can be our friend.

Also a sneaky enemy. ME changes over time, so your limits might change gradually enough that you don't notice, until maybe you wonder why you've been feeling so much worse for however long. Adhering to what was your limit at one time might also mean you lose out on activities you could have been doing because your limits rose. I'm a proponent of occasional retesting of foods, limits, etc. How often might depend on how severely you react to triggers. I don't get lengthy crashes, so I retest often. Someone who had a bad crash should be more careful.

 

[hapl808]

So I don't walk around for "exercise" - I do it for things I need to do. And many days I can't do anything because I've overdone it the day before.

It sounds like you think that many of us just lie around to save energy - it's the opposite.

This. I've never felt, "Hmm, I think I've spent 'too much' time motionless in bed."

I'm only motionless in bed if I physically can't get up. As soon as I feel I can make it to the bathroom or to get some tea, I'll get up. My problem is always doing too much - unfortunately too much is often just a phone call later in the day like @Mary says. I haven't had to worry about 'exercise' for more than a decade, because keeping myself fed is already enough to trigger regular PEM.

I'll say again as I've said elsewhere - mild to moderate is a different disease than moderate to severe. When I was in the more mild side of moderate (going out a couple times a week), I thought things could be managed. Now I go out…never. Last time I went to a doctor's appointment led to a months long crash.

To someone who hasn't experienced more severe forms, this sounds like mental illness, not the disease they have experienced. And I'd propose that's because it really isn't the same disease.

For the first 15+ years I I don't think I ever experienced severe, except maybe briefly for a few days here or there when I was bedbound during a bad crash. But I always recovered eventually to a moderate level. My more severe symptoms back then were GI, muscular, etc.

 

[Florida Guy]

How do you ration your energy? I want someone to invent a gauge which I can attach to my body and which will start blinking with a very big red light and emit a very loud noise when I've reached my limit for the day, so that I don't crash the next.

That would be a great invention. If we had that we might never have pem except when we ignored the warning. I thought I could do a few hours a day of activity but unless the activity is sitting, I will get pem from light housekeeping even with resting frequently. I just found out this week. I thought I was taking it easy but now I wonder if I'm getting worse

It sounds like you think that many of us just lie around to save energy - it's the opposite.

There are things that have to be done of course but what is wrong with taking it easy as much as possible? I take it easy, I try to pace but I need your invention to do it right. If I'm sitting I can do any activity such as surfing videos and other things for entertainment. I do stuff like that all day. Why would someone not try to save energy if they know they have a limited amount?

My point was that if you have an energy envelope, you know how much you can do and try not to go over. In your case and in the case of many who are severe or very severe, they can barely do the things they have to do. I'm not saying people should push past the limits, but they should move as much as possible. If they are doing all they can and have no extra energy to do more, then of course it would be foolish to push

It's a nice, logical, intuitive theory. I don't think it means much of anything - no offense meant.

I can barely get around with crutches. It constantly causes me PEM. I don't want to be bedbound and lose my muscles, but there's no habit or happy medium for me. None. Zero.

OK you have no extra energy, you need every bit you have just to get through the day. It would make no sense to try to do more since you have pem from daily activities anyway. Thats not what I was saying. Those who are mild or moderate may be able to do more or may run into trouble if they do. I'm not advocating GET, I'm simply saying do what you can. OK you are doing all you can and doing anything more will not help you. For some who may have thought like I did that you need to avoid as much exertion as possible to save your energy for other things. There is a delicate balance between doing too much and not enough

I can't do it because of ME/CFS, not because my muscles are so weak. It's not a mix. I could easily rip open a jar - but I will then be unable to type on a keyboard for a week or two.

I know it brings weakness from the nerves being messed up or whatever causes it. But if you are only able to do a little bit, then your muscles will atrophy. Its been proven over and over. It may be unavoidable but for those who are able to go out and walk or do something, it will help them long as they dont do too much of course

If people think its wrong to say that, then ignore it. If you are mild and able to do more, you have a chance of getting stronger. Do what you want, I'm not going to argue anymore

 

[Wayne]

Also a sneaky enemy. ME changes over time

And from day to day. I'm fortunate in that I can do leg lifts almost every day. It's really helped with leg strength, and allows me to do normal walking with less energy. However, there are some days when I can't do even this basic "exercise", because my body is screaming "Not Today Please".

I totally get it that for some pw/ME/CFS, that's every day. Which is why I feel so fortunate to do what I can physically. I have a pretty variable window when it comes to physical activity, less of a window with mental activity, such as talking on the phone, watching a movie, etc.

I'm always in trial and error mode. Sometimes I pay a price for doing too much, but other times I'm surprised how much I can do without triggering anything. This may sound a bit hard to believe, and I'm not suggesting this would work for anybody else, but I often find I can do the most without triggering PEM when I've done my activity after not eating for about 18 hours. It almost seems counterintuitive, but I guess it's my own unique makeup.

 

[Wayne]

I'm simply saying do what you can... There is a delicate balance between doing too much and not enough.

Your first sentence above is how I interpreted your prior posts. Your second sentence is one I strongly believe in. Everybody has to find that delicate balance--on a day to day basis it seems. Very little ever seems to be set in stone.

Just for reference: I'm one of those people that does tapping regularly. Physical tapping, and if I don't have the energy, I'll do mental (or inner) tapping, which seems to work just as well. However, there are times when I can't even do inner tapping. It's just too exhausting, and I don't want to start draining myself unnecessarily.

This may be similar to why some pw/ME/CFS who try to do DNRS end up crashing so hard.

 

[wabi-sabi]

Did anyone see the live stream of PhysicsGirl who has long COVID? It shows a day in the life of a severe person. It really helped me see better how to pace and what being bedridden feels like.

I am always surprised at how much variability there is to our condition, even among the bedridden.

 

[Hufsamor]

I’m in a place now with my me/ cfs where I exercise almost every day.
(There have been months where I couldn’t.)

For now, this is how I do it:
I don’t do more than that I would be able to repeat it every day.
I lay down or sit through my exercises rather than stay upright.

I never extend 15 min, including breaks.

In the beginning I did 3 reps of each exercise, then half a minute break,
and I used like 3 different exercises.
Even if it seems I’m ready for increasing, I stick with the same amount of exercise for about 3 weeks before I consider any increase.
I don’t do the same exercises every day, but alternate to try and use different muscles.

To think the exercises, as suggested by Wayne, is a good idea. You build connection between the brain and the muscles. I’ve read several research showing good results from this approach. (I’ve been so sick I couldn’t do this either, so I know not everyone can.)

I’ve also bought myself an activity watch (I don’t remember the English name for it?) . It’s a lot to learn in the beginning, but in the end it’s been very helpful for me, not to extend my limits and go in to a crash.

I’m lucky I’m able to do a little exercise now.
It has nothing to do with exercising the me/cfs away, but rather to stay independent as I age for as long as I can, to stay as pain free as possible, and to try to slow down the loss of muscles as much as possible. A stronger muscle needs less energy to do what it needs to do.

If I have to go to an appointment, I don’t do exercises that day.
If I’m in PEM for some reason, I don’t exercise.
If I feel bad, I try to mimic the exercises in bed, maybe back to the beginning with 1-3 reps.

Again. It’s been months where I couldn’t.
And even when I was much better than I’m now- every time I tried to exercise I got into a huge crash. But I’ve learned from other me/cfs patients and found a way I can exercise. Starting super slowly. Take days of if needed. Increase super slow.

Some me/ cfs patients are doing weight lifting. Max weight for 1-3 reps. But they can’t take a walk.
I can’t do weight lifting without getting super sick. But it shows that we have different bodies, so even if we pick ideas from other me/cfs patients, we need to figure out how it works for us personally.

I found this fellow on instagram. I followed him for a while there, looking through his posts, picking exercises I thought I could do. (I have now bought a subscription and I’m super happy about it. If an exercise is too heavy, I don’t do it. I sit or lay down as much as possible. I don’t do as many reps as he does. In the beginning I often used his easiest programs instead of following along day to day)

 

[Viala]

If you feel fine after doing exercises then by all means do it. If you have PEM right after or within a few days, you need to limit these activities.

ME/CFS can progress but it doesn't happen with everyone and if it doesn't we should keep our bodies fit within our comfortable energy envelope, we may need it later.

What's controversial about GET is that they persuade people to push even when they feel worse, which of course is a recipe for disaster. It's like telling someone with diabetes that if they eat more sugar then eventually their diabetes will go away. It's pseudoscience.

Most people with ME/CFS would love to exercise, but it's impossible because it causes too much discomfort sooner or later, so we just don't do it and often don't even think about it because we're too fatigued. When we have a good day and have more energy the opposite happens, it is difficult to stop our activities. So if you want to exercise, have energy to do it and feel fine afterwards, go ahead.

 

[Garz]

I was diagnosed as having CFS - and all my symptoms perfectly match all the symptoms in the symptoms surveys here - including PEM

but after 5-6 years of misdiagnosis - i found that my illness was actually driven by a chronic bacterial infection with bartonella ( see my other posts for more on that).

anyway - despite having pretty severe PEM that could render me bedbound - i was able to carefully start exercising and by applying the principles outlined below - gradually increase what i could do over time

i wrote a guide for how i did this for another group i am in - but will post it below in case it helps others here as i am sure some significant portion of CFS sufferers are, like me, actually suffering from an undiagnosed bacterial infection - and the same is likely to apply to them - and possibly others .

i am still in treatment - but i am now able to work out with weights for over 1hrs per day and continue to move forward

it has definitely improved both what i can quantitatively get done in a day - and also qualitatively improved my quality of life
-------------------------------------------------------------------

obviously exercising with Lyme and similar infections is not a straightforward proposition

many will feel they cannot possibly exercise at all - and overdoing it is all too easy, and can actually set you back with more fatigue and adverse symptoms.

i didn’t think exercise beyond maybe walking was a possibility for me despite exercising most of my life - due to feeling so ill with Lyme.

however, i have been surprised to find that even when feeling pretty weak and awful - i can not only start to exercise (if done carefully) but actually gain strength and physical capability - despite how uncomfortable exercise feels now - vs before i got Lyme.

not only does this give me all the benefits that exercise normally gives people:

better mood, sleep, overall health, self-esteem etc

but it has actually increased what i can get done in a day - vs before i started

in other words, it has helped me move my recovery forward in measurable ways


so, i thought i would post a few words i put together on how to exercise with lyme (as someone who experienced chronic fatigue, PEM etc)

much of it is in line with Dr Burrascano's guideline

but adds a bit more specific guidance.

========

Dr Burrascano talks about this in his 2008 guidelines for Lyme treatment - see the sticky post at the top of the forum page - i think it’s in there somewhere - it’s well worth a read

basically, we each have an ideal window to exercise in - whether sick or elite athletes

the bottom of the window is defined by the minimum amount we need to do to send a signal to our system to repair itself stronger in preparation for the next challenge

the upper end of the window is defined by the level beyond which we do more harm than good

the issue is that with lyme (or any fatiguing illness), especially in the beginning the lower end of the window is very close to the top end of the window- and such there is a very narrow margin between doing enough and doing too much.

also aerobic activities (activities like jogging or HIT) seem to trigger much worse responses than anaerobic ones like resistance training. Dr Burrascano highlights this also - and it has been my experience too.


he also says it’s the strength exercises that are the most important for the immune system and essential to get better from lyme - so it’s good that you are looking into it.


as an example, at this stage, I can walk 3-4 miles at a fast clip and be fine the next day - but if i try to run for even 100yards i will have ill feelings and extra fatigue the next day. yet I can do resistance exercises - like press-ups and dumbbells as long as i am careful with how much. i had to build up very gradually at first though.


my advice:

1. start/ keep up the walking - its a great basic form of exercise and doesn't seem to trigger PEM unless you overdo it
2. add in gradually some form of resistance training (strength training - so, weights, isometric etc - whatever works for you
3. work out where your tolerance is - deliberately do too little to begin with and work up to find your limit - then back off a little.
4. be systematic - keep records and have a target for each workout - make only v small increments each workout to avoid PEM reactions
5. you will likely need longer recovery periods to begin with - so - esp if you have issues with PEM maybe only exercise 1x per 5-7 days. later aim to gradually bring this down to 2-3 days in-between - and eventually every other day-it will be slow at first - do not be discouraged - momentum will build
6. focus on recovery as much as the actual exercise part - this is very important when you are ill - as your recovery processes are not working as well as they would normally - so you need to give it even more support - this includes:

• diet (your body needs good nutrition when fighting this thing and exercising) to recover well
• sleep - this when your body rebuilds itself best - the better you sleep, the better you will recover from exercise and the faster you will progress

i am following the above plan and am now able to work out 45mins every 3rd day and am getting stronger almost every workout (something that hasn't really happened consistently since my mid 20's) - despite also treating lyme with antimicrobials at the same time.

i'm not saying exercise will feel good - it will not to begin with - but stick at it - be systematic - increment slowly - and you will be surprised how much you can do.


good luck!!